posted
Mid-June 2010 I was hiking a lot in deer country along Mammoth Creek (CA) near highway 395. There's a lot of sagebrush and then, a little higher there are the pines. One night I reached to the back of my right shoulder blade and pulled off an adult Pacificus tick. 3 days later I had the classic bulls eye rash around the tick bite.
It started itching so horribly that I actually went to the emergency room (hugh mistake that cost $600). The doctor said that although the rash looked like lyme disease, that it could not have shown up in only 3 days. He insisted it takes 7-10 days for this rash to appear. He finally diagonosed me with "Possible early detection of lyme diseases." He gave me 14 days of Doxycycline.
I have never taken antibiotics for more than 2-3 days, and have only taken them a couple times in my life. This time I was so scared that I took them the whole 14 days. The itch went away, pretty much, but I was nausated most of that time.
I had flu like symptoms. Over the coming months I developed some knee pain, though it was never constant. Brain fog was at an all time high.
Then Thanksgiving weekend 2010 I awoke one morning to horrific burning pain in my left shoulder blade. It persisted all day. The next morning I woke to my entire left side being numb and feeling like pins and needles, like when you have your leg go to sleep and it hurts when you try to stand on it, it is "asleep." My whole left side was like that.
It wasn't constant, though. I found that if I stretched out my right leg, it would go away. And so it came and went all week, but each time it took more effort to go away, until it was staying and nothing I did could make it go away.
I went to Southern California to see a doctor. I have had high blood pressure for a long time. My numbers freaked him out (Kaiser) and he admitted me to the hospital. He completely dismissed lyme disease as having anything to do with what was happening to me.
Hour by hour I went downhill. They did a lot of expensive tests and said I had a stroke. They pointed to a white spot on my MRI and said there it was... but since I have read that can be a lyme symptom. I never felt like I had a stroke.
Between the emotional drama of being hospitalized, and what I believe was lyme kicking in big time from hospital stress, and the horrible drugs they put me on, by the time I left that place 3 days later I was in really bad shape. Much worse then when I went in.
It has been a month. I have gone off one of the statin drugs as I don't believe I ever needed to be put on it. (They put me on it without even knowing my cholesterol levels). Also, I have since found out my levels are only mildly high.
My brain fog is improving. Most of the muscle pain is gone, and now only comes and goes on the left side of my neck and head. The trouble is that my left side's tendons are now so tight that I can hardly use my leg. The pins and needles are completely gone. The numbing is mostly gone. I just am having trouble with the left side tendons. I thought at first it was the muscles, but now I think it is the tendons.
Has anyone had similar problems and what did you do about them? Will my tendons finally loosen up and go back to normal? They feel like they are so tight that I may never be able to climb Mt. Whitney or Half Dome ever again!
posted
wow, Im so sorry that you had this experience. Unfortunately alot of doctors know little to nothing about lyme and coinfections. I have had similar symptoms, knee pain, brain fog, numbness and tingling...and a lot of other symptoms that come and go. Misdiagnosed many times.
Im sure others on here will respond with helpful links....but first suggest that you see a Lyme literate doctor which u can find by posting in seeking a doctor. 14 days on doxy isnt long enough to treat lyme.
-------------------- Psalm 119:50 My comfort in my suffering is this: Your promise preserves my life. Posts: 292 | From Heaven | Registered: Jan 2011
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annxyzz
Frequent Contributor (1K+ posts)
Member # 20404
posted
I would take doxy longer even if I had to buy it at 4 corners pharmacy or buy pet doxy thru Thomas Labs Vet supply or amazon.
There is too much risk in losing the ability to have a normal life . The risk of taking Abx longer is less severe than becoming sick for years on end .
Take charge of your health.
-------------------- annxyzz Posts: 1178 | From East Texas | Registered: May 2009
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posted
My husband hiked with me and though he never got the rash, he is convinced he also caught lyme. He was tested but it came back negative. We both just started a Vitamin C and Sea Salt cure I found online in an e-book. It's only been a few days and I pray it works. You are right, annxyzz, I hate prescription med but now that I know how debilitating lyme is, I would take the meds over lyme anyday.
Jennifer70-- I too have had knee pain but it comes and goes so I'm not worried about that. However, this 24 hour a day tightness of the tendons on the left side of my body has me worried. I don't know whether to be exercising a lot or not. I don't want to tear them and cause damage, so I'm just not sure what to do. Has anyone here experienced this?
-------------------- Tick bitten mid-June 2010. Bullseye rash 3 days later. Posts: 4 | From Mammoth Lakes, California | Registered: Jan 2012
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-------------------- --Lymetutu-- Opinions, not medical advice! Posts: 96222 | From Texas | Registered: Feb 2001
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nefferdun
Frequent Contributor (1K+ posts)
Member # 20157
posted
Lymetoo is right. I was bitten by a wood tick and 6 doctors told me I could not have lyme. We all have stories like that which is why we now have chronic lyme. After two years of abx I tested CDC positive for borellia and also babesia duncani and ehrlichia.
I had tight tendons at times too. I felt like they would snap. Borellia symptoms migrate and wax and wane. That makes it very hard to diagnose because you and the doctor, believe it is one thing and then another.
The fact that you had a bull's eye rash is proof that you were infected with lyme disease. More than likely you did not receive a high enough dose of doxycycline much less a long enough period of time to take it.
If you had syphilis you sure would not try to cure yourself with vitamin C and salt. Borellia is a close relative to syphilis and actually considered harder to eradicate. The more entrenched it becomes, the longer it will take to get into remission.
There are always co-infections. No one is lucky enough to just have borellia, what is referred to as lyme disease. You may discover you also have babesia, bartonella, ehrlichia and other pathogens.
-------------------- old joke: idiopathic means the patient is pathological and the the doctor is an idiot Posts: 4676 | From western Montana | Registered: Apr 2009
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dbpei
Frequent Contributor (1K+ posts)
Member # 33574
posted
I am sorry for your ordeal. Being misdiagnosed is all too common. Please get yourself to a lyme literate MD. Your symptoms are all sounding like they are related to chronic Lyme.
With your history of high blood pressure, the salt and Vitamin C protocol could be very risky.
Negative lyme tests do NOT mean NO LYME! I had 2 negative tests followed by a 3rd that was positive all in the same year.
Best wishes for a good recovery.
Posts: 2386 | From New England | Registered: Aug 2011
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posted
Hate to tell you this but generally an MRI can tell the difference between a stroke and brain inflammation from lyme or another cause. You need to get serious about reducing your blood pressure and also treating for lyme if you do have it.
The lyme bacteria likes to seek out your body's weaknesses.
Also any infection can cause hypercoagulation which increases the risk of stroke and heart attack.
You can have multiple issues going on at the same time which complicates treatment and diagnosis.
For example you could be diabetic and get bitten by a tick and develop lyme disease.
And I have read that lyme can actually cause ruptured tendons so that is possible.
You need to get to a doc that really understands lyme and tickborne diseases. Ticks give many people more than one illness. The regular docs are pretty much unaware of all the possible diseases that a person can get from a tick
Bea Seibert
Posts: 7306 | From Martinsville,VA,USA | Registered: Oct 2004
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posted
I so appreciate all the information and help. I will get to a doctor as soon as possible. I forgot to mention that my left knee feels like it has a fire inside of it burning.
My left side still has super, super, tight tendons from neck to foot.
-------------------- Tick bitten mid-June 2010. Bullseye rash 3 days later. Posts: 4 | From Mammoth Lakes, California | Registered: Jan 2012
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